AGO1 mom
"The Argonaute syndromes conference was more than I expected and better than I imagined. I personally met the researchers that discovered my son’s AGO1 disorder!"
My goal is to optimize potential and enhance quality of life for individuals with AGO and their entire families. The AGO conference inspired hope.
AGO1 mom
It was an opportunity of a lifetime to collaborate with the scientists and physicians!
We shared information and learned from each other mutually. I am grateful for their intelligence and drive to continue research in hopes that one day treatments, therapies, medications, and eventually a cure could be possible. I am honored that my son is part of helping others in a profound way. My goal is to optimize potential and enhance quality of life for individuals with AGO and their entire families.
The AGO conference inspired hope. It was therapeutic to meet families who relate and understand daily life with a child who has a neurodevelopmental disorder— the challenges, unknowns, advocacy needs, and the importance of celebrating successes which to others’ seem insignificant. The AGO Association has brought people together in support and networking. I understand the challenges ahead, but as a parent I am more optimistic than ever.
Here in hope ~ for the love of Rilee.
I was fortunate to be able to attend to AGO 1 and AGO 2 first medical and family conference. It was amazing meeting the researchers who found this disorder and all the time and work they continue to put forth to find help for these individuals. My grandson is so lucky to have these people working for him.
The families we met were very friendly. It was rewarding to know that we are not alone. I had the chance to interact with the AGO individuals and realize each one is special in their own way. My grandson and these other individuals are paving the way for future children with this diagnosis and I am excited to hear about how treatments/therapies can be tried make their life the best it can be. Thank you for letting me take part!
It was amazing meeting the researchers who found this disorder. My grandson is so lucky to have these people working for him. And it was rewarding to know that we are not alone. Every child is unique.
AGO1 grandma
I found it interesting that researchers determined something was missing or altered in the proteins among participants studied. I am not a medical person, I am a grandfather of one of the individuals found to have AGO1, so a lot of this is hard for me to understand. It gives me hope that someday maybe they’ll be able to figure out what caused the “missing link” as I call it. Perhaps, they will be able to fix or repair it somehow safely without causing any other adverse effects so individuals live a happy, healthy life.